Take control of your epilepsy and seizures. Seizure management has never been easier.
TAKE CONTROL TODAYok so i've had epilepsy for as i long as i can remember! i remember as a kid i just used to run into things... like i found myself against the wall (or on the ground after bumping into the wall) or on the other side of the room but i didn't know how i got there! this is all i remember! as i got older it started getting worse! like if i was holding something in my handsi would drop it... then when i gained consciousness i would find myself on the other end of the room!
during all this time i never thought anything of it! except i was embarassed to go eat with others at school since it happened there more than once! just dropped my tray and then i'd find myself on the other side of the room... with everyone staring!
2 years ago when i wanted to get a driving license i told my doctor about my 'problem'! he sent me first to a psychologist who then sent me to a neurologist! so i had my first eeg and it showed some abnormalities! i was put on keppra! at age 20
for a year and a half i was ok! but then i started having seizures
again... bit by bit they started getting stronger! till i fell at the
gym (2months ago). i then forced my hosting parents to take me to the
neuro! this time the eeg was almost normal! i was reluctant to tell
the neuro about the fall because i could se he wanted to take me off
keppra.i just told him about the previous 6 months and he put me on
keppra 2000 a day
the following day at the gym i fell again and my whole body was numb! i couldn't move or speak! for 40 minutes(that's what the others say) because i don't remember falling! i only remember walking around for 2 seconds confused!i was like under a spell when i walk up! i couldn't talk still..
later on i had violent convulsions and i was speaking in a weird way.. like stutteringexcept that it was caused by the violent convulsions and the fact that i hadn't spoken for almost an hour!
i called my neuro who just brushed it off as the normal evoltion of epilepsy! from that time i started having these violent convulsions almost everyday and it was caused by lights! even now and when they stop i have head aches strong headaches and i feel sleepy!
so iwent to another one for a second opinion! he practically attacked me! and said i had some other problem and he was angry because i couldn't explain exactly what happened (who can?)
since other people just brush it off!
anyway he says i have Non epileptic seizures so he took me off keppra! tomorrow i have to go for the ambulatory eeg. i mean if he was so sure why is he making me take another eeg???
i do know that my seizures are not typically epileptic! but i doubt they are psychogenic either! i know how to deal with things and i never had them when i was stressed or after a period of stress! my body reacts in other ways to stress
sorry it's too long but i just wanted to talk to people who can actually listen (i hope) since my neuros didn't! i don't know what to think or do now!
what do you think??? are they really psychogenic???
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Recent Comments on this Discussion
Hi Telle,
You're not alone...we've all had similar experiences. I started walking into walls, drowning in showers, falling down the stairs + passing out when I was 12.
I definitely had TLE and my parents -- all 4 of them -- were appalled. They wouldn't even SAY the "E" word. Which is pretty ironic since one was a psychologist and one was a surgeon!
So, here's some advice from an old veteran...
1. Keep a daily seizure diary, noting what you eat, when you sleep, your daily activities, how you feel before, during and after an event and how you feel in general. That way, you might get a handle on what your "triggers" are and your next neurologist can get a better idea of what you're going through. (Sometimes, stenous exercise causes a rapid change in body temperature which, believe it or not, can trigger a seizure.) There's a good article here about "Managing Seizure Triggers" http://my.epilepsy.com/node/978513
2. Next, find a neurologist who actually CARES and will listen to you. We are not here to serve them. They are here to HELP us. I don't know where you live, but for a "Comprehensive list of GOOD Neurologists, Epileptologists and Neurosurgeons, as recommended by eforum members of the EFA, based upon positive personal experiences, go to http://my.epilepsy.com/node/985817
3. Do some homework. The orange bars to the left have a wealth of important and useful information.
4. You define yourself. You are not defined by your seizures. Stand up for yourself and don't stop, until you get satisfactory answers. Meds being pawned off on you to shut you up is NOT the answer.
End of lecture. :-) Good luck! And please, let us know how you make out. Phylis Feiner Johnson www.epilepsytalk.com
hi,
thanks for the reply! i've noticed that my seizures are triggered by lights! and lately during seizures i'm very sensitive to sound... even people's voices! i feel like my head is going to explode!! for now that's all i have noticed.
unfortunately i live in italy and this is the only site i found that is really useful! here they don't really consider it a problem, so they just give you meds and that's it. or just brush it off as some trauma or stress... the few forums i have come across have no real info on epilepsy and are followed by a few people!
i will keep you posted
Here's an article I wrote on my website:
Below is a guide to some common seizure triggers. You may not feel or notice anything in particular. Or you may have triggers which are not mentioned here. Keeping a seizure diary is the most effective way of keeping track of what triggers your seizures.
Reflex Epilepsy
Some people notice that their seizures occur in response to very specific stimuli or situations, as if the seizure is an automatic “reflex.” In this type of seizure, it occurs consistently in relation to a specific trigger. For example, one type of reflex epilepsy is photosensitive epilepsy where seizures are triggered specifically by flashing lights. Other types of reflex epilepsies can be seizures triggered by the act of reading or by noises. These reflex epilepsies are not common. However, knowing the type of epilepsy and trigger is important information for a correct diagnosis. You can then work on eliminating these triggers whenever possible or find ways to lessen their effect on you.
Flickering or Flashing Light
If you have photosensitive epilepsy, certain types of flickering or flashing light may incite a seizure. The trigger could be exposure to television screens due to the flicker or rolling images, computer monitors, certain video games or TV broadcasts containing rapid flashes, even alternating patterns of different colors, in addition to intense strobe lights.
And surprisingly, seizures may be triggered by natural light, such as sunlight, especially when shimmering off water, even sun flickering through trees or through the slats of Venetian blinds.
Stress
Stress can trigger hyperventilation which can provoke seizures, especially absence seizures. It can increase cortisol, known as “the stress hormone” because cortisol is secreted in higher levels during the body’s “fight or flight” response to stress. And, as you may imagine, it’s responsible for several stress-related changes in the body which also may influence seizure activity.
Negative emotions related to stress, such as anger, worry or fright, may also cause seizures. This happens because the limbic system, the portion of the brain that regulates emotion, is one of the most common places for seizures to begin. You’ll probably find that you have more seizures during or after periods of anxiety or stress.
Lack of Sleep
Inadequate or fragmented sleep can set off seizures in lots of people. In one study, the lowest risk for seizures was during REM sleep (when dreams occur). The highest risk was during light non-REM stages of sleep.
Hormones
For many women, certain hormones seem to trigger seizures at particular times in their menstrual cycle. It can be during ovulation, menstruation, pregnancy or menopause. This is known as “catamenial epilepsy.” If you’re going through menopause, you may find that the hormonal changes at this time make you more likely to have seizures, (although for some women, seizures will not be affected or become less frequent).
Food Allergies
Both food sensitivities and allergies can definitely trigger seizures. Especially foods that are rich in glutamate and aspartame – two very excitatory amino acids. Food allergies may also trigger seizures in children who also have migraine headaches, hyperactive behavior and abdominal pains.
Illness
High fevers in children can commonly incite a seizure. Vomiting, diarrhea, and fever are all triggers. And vomiting may reduce the dosage level of previously ingested anti-seizure medication. As for adults, they usually weather illness fine but it can reduce the seizure threshold, and make you more likely to have a seizure.
Prescription Drugs
Some prescription medications — especially penicillin, anti-depressants and anti-anxiety drugs — can prevent your medication from working. It could be caused by the way your system responds to a certain a drug, a combination of drugs, reaction or withdrawal. Make sure all your doctors know everything you take.
Over-the-Counter-Drugs
Certain over-the-counter medications (Advil and Tylenol are fine but never take aspirin!) can make you more likely to have a seizure, if you have epilepsy or a history of seizures. For example, anti-depressants and antihistamines are possible seizure triggers. Also certain supplements — like evening primrose oil — can also be a trigger.
Alcohol
There are two questions that have to be considered when the question of alcohol use and epilepsy comes up. One is the effect that alcohol could have on the medicines used to control seizures. Alcohol can be dangerous when mixed with sedative drugs and can cause coma, or even death. The other question is whether the alcohol itself will cause seizures.
Large amounts of alcohol are thought to raise the risk of seizures and may even cause them. When you drink alcohol, it may temporarily reduce seizures for a few hours, but then increases the chances of a seizure as the alcohol leaves your body.
Cigarette Smoking
Nicotine is both a stimulant and a depressant to the central nervous system. The nicotine in cigarettes acts on receptors for the excitatory neurotransmitter acetylcholine in the brain, which increases neuronal firing.
But if you want to STOP smoking, here’s a piece of scary information: some nicotine preparations used to help people stop smoking can have a side effect of convulsions. So, if you’re thinking of quitting, check out your smoking cessation program with your doc first.
Caffeine
Much like nicotine, caffeine stimulates the nervous system. Adrenaline is released and the liver begins to emit stored blood sugar. Insulin is then released, and blood sugar drops below normal—a common seizure trigger. And caffeine can be a “stealth” drug, too. It can be found as an ingredient in medications, including some antihistamines and decongestants.
Musicogenic Epilepsy
This is a form of reflexive epilepsy in which a seizure is triggered by music or specific frequencies. Sensitivity to music varies from person to person. Some people are sensitive to a particular tone from a voice or instrument. Others are sensitive to a particular musical style or rhythm. Still others are sensitive to a range of noises.
Individual Triggers
A common trigger is too much heat, internal from extremely excessive exercise or external from an overheated house or apartment. Other triggers include the smell of glue and the color yellow! Many people have their own specific triggers, while others don’t. It’s a combination of possibilities: personal chemistry, biology and genetics. Phylis Feiner Johnson www.epilepsytalk.com